'Butterfly Girl' dies at age 24

By: BRENDA DURAN - For the North County Times
| Thursday, October 11, 2007 1:02 AM PDT ∞

In her short life, Cristina Perez was known to the world as many things: ambitious young woman, daughter, sister, friend, poet, lover of reality TV shows, dancer, Web site designer, dreamer and animal lover.

To many North County Times readers, she was also known as the "Butterfly Girl," a courageous fighter of a rare and brutal skin disease called epidermolysis bullosa (EB), characterized by the presence of extremely fragile skin that gradually is stripped away from the body, producing recurrent blisters inside and outside the body.

It was a disease which had failed to damper the vibrant spirit of Perez time and time again, said her mother, Cindi Hofer.

It was a disease that took her life Sunday at the age of 24.

"She wanted to be stronger than EB," Hofer said. "She never wanted to give up. She was determined to do all she could to stay alive and beat the disease."

About 100,000 people around the world are born with the incurable genetic disease annually.

From the day Perez was born, both her and her mother were on a mission to find a cure that would rid their lives of the ravaging disease.

The two, living in San Marcos, had traveled the globe together and endured a number of trial and error treatments by numerous doctors, which always led them back to square one. The two had also leaned on one another to maintain a positive outlook despite their numerous disappointments.

"I called her my little Mother Teresa," said Hofer. "She brightened my day no matter how gloomy it would get."

Although she had spent all of her life bandaged, Perez had never let her physical ailments keep her from unleashing her inner free spirit, said fellow EB survivor and friend Jamie Hartley.

"She was inspiring to me, she was always filled with ideas," Hartley said. "I will miss her giggles and the way she beautified the world around her and shared it with others." Ý

In the little time she had, Perez had launched her own Web site titled "Through the Eyes of a Patient" fully committed to raising awareness for EB.

Among other things, she spent countless hours writing poetry and investing in her online store "EB Home and Health," which catered to those afflicted with the disease by offering them homeopathic products and other forms of alternative medicine.

"She had advanced the EB community so much because she cared about it deeply," Hofer said. "She hated being sick because she felt that she wasn't contributing to society, she felt every day she needed to contribute something to the world." Ý

Perez had also spent years reaching out to other EB patients as far away as the United Kingdom and Australia, creating a long list of friends who counted on her for support in their own daily struggles.

Hofer said recently that her daughter had even begun to write letters to several countries to urge them to stop the reported euthanizing of infants born with EB.

"She wanted to express her opinions and let them know her life was filled with joy regardless of her daily pain," said Hofer. "She felt everyone deserved a chance to live." Ý

Perez's mission even recently caught the attention of Hollywood stars and EB activists Courtney Cox and David Arquette. A week ago, Arquette had granted Perez one of her last wishes by helping her publish a compilation of her poems in a book, said Hofer.

"It was one of the happiest days of her life," Hofer said. "Every person she met, she has affected their life in one way or another." Ý

On her Web site, Perez recently confessed, "EB keeps me from doing a lot of things, but I don't let it keep me from at least trying. I have lots of goals and dreams for the future." Ý

Even in the last hour of her life in a Palomar Medical Center bed, Hofer said Perez had clung on to her optimism.

"She fought so hard in the end," said Hofer. "She said she had unfinished business to complete. In her heart and in her mind she felt it just wasn't her time."

An open funeral will be held at 2 p.m. Sunday, Oct. 14, at El Camino Memorial Park Chapel, 5600 Carroll Canyon Road in San Diego.

On the Net:

  • http://www.nctimes.com/special_reports/cristina/

  • http://www.ebpatient.com

    Advertisement

    • 23 comment(s)[-]Go to Top

    Fly Christina!! wrote on Oct 11, 2007 12:55 AM:Thank you for your wonderful website and teaching me about EB. I watched a tv show about 6 months ago on EB and was directed to your site. I didn't realize you lived right here in North County. I am sure that your strength and knowledge of EB has helped many people. I am glad you are now set free and my prayers go out to your family because I am sure they wil miss you deeply! Julie in PQ

    Lana wrote on Oct 11, 2007 6:58 AM:Thank you Brenda Duran for this article on our beautiful friend Cristina. Be free Cristina - I love you.-

    Magic Pez wrote on Oct 11, 2007 7:21 AM:Cristina taught me more about living life than any other person I have ever met. She may have had a tiny and fragile body but she is the largest and strongest person who ever entered my life. Cristina was the single most influential and brilliant person to ever enter my life.-

    Shannon wrote on Oct 11, 2007 7:31 AM:The article is beautiful, thank you for writing it. Cristina will be missed by many but she will forever live in our hearts! We'll remember you always Cristina! You have touched so many lives in more ways then one. Be free now beautiful butterfly be free!-

    Dennise wrote on Oct 11, 2007 8:30 AM:Cristina, thank yo so much for the love and inspiration you had always given me. Most importantly, thank you for your pictures, letters of love and your beautiful book of poetry. I will cherish your memory forever and promise to work as hard as I can to find a cure for EB. I miss you so much. Cindi, my love goes out to you always Dennise-

    Debby wrote on Oct 11, 2007 9:05 AM:The world is truly a lesser place with the passing of this perfect person with imperfect skin. Go brave one and dance with the butterflies. To all who loved her, God grant you peace.'

    Lainie wrote on Oct 11, 2007 9:48 AM:We will always miss you Cristina. Your knowledge and your love that you spread so easily throughout the international EB community via the internet was so appreciated by the many other patients, parents and friends of other butterfly's out there. You were always there to answer questions, offers thoughts and ideas, and to laugh with us and cry with us. You will live on through your poems and your website, and will reach out from heaven and touch us with your sweet spirit for many years to come. Cindi, i sure wish Georgia was not so far from California, we will be there in Spirit on Sunday....sending loves and *gentle Hugs*

    Norco wrote on Oct 11, 2007 10:39 AM:Beautiful girl...beautiful person. Her strength and her family's strength have definitely inspired many in so many ways.

    Aunt Cherie wrote on Oct 11, 2007 12:17 PM:My sweet beautiful butterfly, I will miss you so much. You were a big part of my life and I will miss you so much. I will miss your uplifiting spirit that taught me there wasn't anything, I couldn't do in life but to just "believe". You touched the heart of so many and my friends send thier blessings. I am always with you as you are always with me... I love you my Guardian Angel, Aunt Cherie.

    Grandma & Grandpa Hofer wrote on Oct 11, 2007 12:29 PM:You came into our lives when you were two years old and made our lives fuller and happier. We remember getting you your first bike, and watching you ride it around the patio. It was hard for you, but you had so many dreams of being independent. You were our precious child and a very special young lady. You enriched our lives and we will never forget you. Fly free our little butterfly.

    Vivian wrote on Oct 11, 2007 1:02 PM:I believe all the beautiful butterflies go to heaven with soft new skin, and no more pain. They are ready for all the things they were kept from doing while on earth. Cristina was a kind and loving young woman who was beautiful inside and out. It brings me so much comfort to know she is taking care of the little babies we miss and love so much. Thank you Cristina for all you've done....-

    Karen wrote on Oct 11, 2007 2:38 PM:CJ. My heart goes out to you. Iremember when Frankie and I visited Cristina the day she was born. Who could have guessed all the lives she would touch in her journey!

    Jean wrote on Oct 11, 2007 3:43 PM:This is Jean, I have a Grandaughter with E.B. And I always looked forward to Cristina's poems, her words of wisdom and always her support. I think of her often, she truely was a special person. I've learned alot from her even though online I feel I knew her. She will be greatly missed. Jean'

    Reeta wrote on Oct 11, 2007 4:24 PM:Cristina, your beautiful smile & strong yet gentle spirit will live in my heart forever. You inspired me greatly. I will remember you until I can no longer remember.

    myra wrote on Oct 11, 2007 8:50 PM:Cindi, I to have my own beautiful butterfly Matthew and we lived in P.Q. He's been gone for 9 yrs and i truly believe he will be one of many to welcome Cristina. My thoughts and prayers are with you.

    Kathy wrote on Oct 11, 2007 9:00 PM:I am so sorry you have left us, Cristina. I've only met you from the internet, but your love, determination & passion for life is an inspiration for me. You are a wonderful example for all of us. Thank you for speaking out, for life, on behalf of the infants. God be with you and your dear mother & grant you peace.

    Julie (from Australia) wrote on Oct 12, 2007 4:11 AM:I only over knew Cristina on-line but her passing has left a deep impression on me. I was saddened by the news, and yet strangely uplifted to think that she has positively affected so many people in her short, beautiful life. Only the good die young, and Cristina, you were one of the very best.-

    Mark in Florida wrote on Oct 12, 2007 11:35 AM:This is the most touching,inspiration fight against all odds by this mother and daughter.I went onto Chistina,s sites and blog to learn about this very special person.I too love animals and when I saw her cat and dog I just lost it...I never knew about your courageous on going fight against EB. I will always have the two of you in my heart,and in my darkest days you will get me through.God has special plans for the two of you,this I know..YOU ARE MY HEROS

    THIS STORY NEED TO GO NATOINAL wrote on Oct 12, 2007 1:07 PM:This is one of the greatest human intrest stories EVER!!! This is about courage/inspiration and the love between a mother and daughter to fight off this terrible disease for 24 years.That in itself is truly a miracle.No one can even imagine how humanity can be pushed to beyond it's limits in this struggle.Chistina's plight needs to be shown to the nation to bring more awareness to this rare but devestating disaese.Please someone needs to contact CNN/MSNBC/FOXX/NANCY GRACE ect.

    C.J. wrote on Oct 13, 2007 11:00 PM:Christina was so inspiring to many. She has blessed our lives to have known her. Although she may no longer be with us on earth, I know in my heart that her work is long from over. She was a strong person...with a strong mission. Keep up the good work Christina.......your message will always and forever live within our hearts!

    Janet wrote on Oct 25, 2007 4:21 AM:Cristina, Katie and I keep seeing you fly by. Every little butterfly that flies by is you as far as Katie is concerned. She is to little to know that she shares EB with you, but she is on the look out for you every day. You have been such an inspiration to the world and I am sure that all of the other butterflies that have gone on before you have greeted you with warm and loving arms. May you all fly and be free.

    Mindy wrote on Nov 18, 2007 6:52 PM:My nephew Robbie just passed on friday morning from this terrible disese. He sufferd for 24 yrs. He was a wonderful and brave person to have so much pain in such a short life god bless him. God bless his mother for being there for him . Love his aunt Mindy.

    Tony wrote on Apr 7, 2008 8:06 PM:Inspirationally - Amazing.

    i, like other people happened though the channels and caught the discovery health segment about Christina's battle with EB..
    i surfed the net and found her website and just fell in love with her story, so i wanted to tell her through her myspace how much her life reminded me of a movie i once seen, but unfortunately as i began to read her friends comment's i found she passed away nearly 6 months prior.
    A Quick poem for you __________________

    God Bless you Christina, and Thank you.
    you truly are
    a host of an amazing feeling,
    the hope of a forgotten people,
    and a voice of a faint cry-
    that amplify's it's place
    amongst the busy days
    and crashing tides.
    it's easy to see why they called you a Butterfly-

    goodbye

    First name only. Comments including last names, contact addresses, email addresses or phone numbers will be deleted. All comments are screened before they appear online, so please keep them brief. Comments reflect the views of those commenting and not necessarily those of the North County Times or its staff writers. Click here to view additional comment policies.

    Submit Comment[-]

    (optional)
       

    Advertisement

    Videos